The Best Care Possible
A Physician's Quest to Transform Care Through the End of Life
A doctor on the front lines of hospital care illuminates one of the most important and controversial social issues of our time.
It is harder to die in this country than ever before. Though the vast majority of Americans would prefer to die at home—which hospice care provides—many of us spend our last days fearful and in pain in a healthcare system ruled by high-tech procedures and a philosophy to “fight disease and illness at all cost.”
Dr. Ira Byock, one of the foremost palliative-care physicians in the country, argues that how we die represents a national crisis today. To ensure the best possible elder care, Dr. Byock explains we must not only remake our healthcare system but also move beyond our cultural aversion to thinking about death. The Best Care Possible is a compelling meditation on medicine and ethics told through page-turning life-or-death medical drama. It has the power to lead a new national conversation.
“There is no palliative care physician for whom I have more respect and admiration than Ira Byock. In this strikingly important book, Byock presents an agenda for end-of-life care that should serve as an ideal template on which to build our best hopes for the final days of those we love and ourselves—and a corrective for our society.” —Sherwin B. Nuland, MD, Yale Interdisciplinary Center for Bioethics and author of How We Die
"With elegance, compassion, and energy, Ira Byock shows us how to get the best end of life care. He is a great storyteller and a brilliant analyst of health care in America. This is the book to read or give, if you are facing this hard situation. Nobody gets out of this life alive, but Byock shows us how to do it elegantly and well." —Jane Isay, author of Walking on Eggshells
"This is an extraordinary and wise book on how dying people can be cared for. Written by a master clinician, a man of great compassion, Ira Byock has a vision of health care that is brilliant and kind." —Roshi Joan Halifax, Abbot, Upaya Zen Center, Sante Fe, author of Being with Dying
"In a world in which politics are polarized and ethical discussions often descend into a food fight, Ira Byock is that rare doctor: a humane guide leading us with honesty and compassion through complex stories about living and dying well. He's a real-life rebuke to those who think palliative doctors are "death panels" and a mentor to every medical student inevitably faced with mortality. This is must reading for everyone trying to make humane decisions in a high tech world." —Ellen Goodman, longtime syndicated columnist for The Boston Globe
“At a time when a long life can become a curse as readily as a blessing, this lucid and compassionate book points the way to more humane treatment of a life’s last days.” —Rabbi Harold Kushner, author of When Bad Things Happen to Good People
“The baby boom generation has transformed every stage of live we’ve touched. We’re now transforming the dying process. And Dr. Byock is leading the way… brilliantly!” —Christiane Northrup, MD, ob/gyn and author of the New York Times bestselling Women’s Bodies, Women’s Wisdom and The Wisdom of Menopause
"A magnificent, moving, and deeply important work. Ira Byock is a trailblazer whose life’s work has forever changed the way we view dying in this country. But there’s much more to be done. The Best Care Possible is Byock’s urgent and passionate call to action for the nation. This book is a must-read for anyone who thinks there’s even a possibility that they someday might die.” —Dave Isay, founder of StoryCorps, author-editor of Listening Is an Act of Love
“In a world of sound bites, end-of-life concerns are framed politically with emotionally charged rhetoric. Above the clamor, Dr. Byock writes a compelling case for consistent, compassionate, and enduring palliative care for all people as they reach the winter of their lives. Through vignettes he outlines the challenges for the patient, the caregivers, and the medical community, and ably advocates a revolution of care for the end of life. This is a revolution sorely needed and worth fighting for.” —Pastor Robert Fleischmann, National Director, Christian Life Resources
“Dr. Byock, one of the country’s leading experts in palliative care, shares his wisdom and insights on how to get the best care possible when we are confronted with a potentially life-limiting illness. When my own mother was seriously ill, Ira’s words helped our family make the right choices and make sure she got the care she wanted – and no more – during her last months. His words can help you.” —Elliott S. Fisher, MD, MPH, Director of Population Health and Policy, The Dartmouth Institute
“In The Best Care Possible, Ira Byock tells us why we need to move beyond medicine’s fixation on conquering death to a vision of end-of-life care focused on the quality of the patient’s experience. This is a beautifully written, highly personal account that makes real the struggle of patients and families to escape the “high-tech”, more is better imperative that dominates the American way of death. It provides compelling examples of how the physician, committed to reform, can help patients achieve the care they want and need. But Byock goes further: he makes the case that professional reform is only part of the solution; overcoming the medicalization of death will require the mobilization of the wider community in the support of the dying (and those with chronic illness).”—Jack Wennberg, MD author of Tracking Medicine: a Researcher’s Quest to Understand Health Care
“This is a profoundly truthful book. Ira Byock uses powerful stories about real people to explain the complications, nuances and often absurdity of advanced illness in 21st century America. He shows how courage, shared decisions, wise doctors and nurses and palliative care can make the difference. Above all, he calls for a cultural transformation, so we can deal with the end of life as individuals, families and society. Who should read it? All of us who are mortal.” —Bill Novelli, Professor, Georgetown University and co-chair, the Coalition to Transform Advanced Care (and former CEO, AARP)
“Dr. Byock lets the stories of patients, families, and medical colleagues open windows into the heart of the issues. He leads the reader captivatingly from story to story to see and feel what the best care through the end of life can be and deftly invites our nation to envision the best care for our culturally diverse society and cultures. Dr. Byock captures the fundamental human impulse to care lovingly for one another at the most sacred and privileged moments of our lives…now and through the end of life.”—David Lichter, D.Min., Executive Director, National Association of Catholic Chaplains
“Dr. Byock’s book rejuvenates me. In allowing us the special privilege of entering the sacred space of their final journey, people teach us precious lessons about ourselves. Dr. Byock has a gift of sharing the lessons he’s learned in a most readable narrative marked by compassion, love of life, and lucidity.” —Rabbi Bunny Freedman, Founding Director of Jewish Hospice & Chaplaincy Network
Why did you decide to write this book?
Despite all the advances in medicine, far too many people who are seriously ill suffer needlessly and end up dying badly.
America’s health care system is actually a disease-treatment system. People’s health – including their physical, emotional, social and spiritual well-being, is often ignored in the quest to preserve life at all costs. In the process of battling disease, people often experience needless suffering, sometimes dying sooner than they should, sometimes lingering in a state of prolonged dying that few people would want.
Dying will never be easy. Similarly, caring for a loved one who is in the waning phases of life is inherently hard. All of us will eventually face the end of life, but neither dying nor caregiving has to be as hard as they are today.
It would seem irresponsible for me to what I have learned from patients and families and my experience as a doctor over all these years to myself. In a sense I am but a conduit, learning from patients and their families and passing along to my contemporaries the insights I have gained
What do you mean by “the best care possible?”
When we or someone we love becomes seriously ill, we all want the best care possible for them. Even in our culturally diverse society and despite the highly sensitive nature of the topic, receiving “the best care possible” is one thing on which everyone agrees. Doctors also want to provide the very best care for the people they serve.
But when it comes to illness and dying, one size does not fit all. What is just right for one person, might be utterly wrong for another. And optimal treatment for an early stage of illness, might be ill-advised later on.
Some things are clear: the best care is medically excellent, as well as highly personalized. In addition to bringing state-of-the-art science to bear, the best care must be consistent with the ill person’s values and preferences, as well as the needs and concerns of the person’s family.
It may all sound like a tall order, but I know it is possible to deliver on this vision. Day in and day out, our Palliative Care team at Dartmouth-Hitchcock Medical Center strives to do just that – and with some success.
It is not easy, and palliative care certainly isn’t fancy, in comparison to high-tech new treatments for cancer or cardiac disease, but it is effective. The best care typically involves careful planning and communication, meticulous attention to people’s symptoms and emotional needs, support for families in caregiving, coordination of appointments, as well as crisis prevention and development of management plans. It is ongoing, honest, and forward thinking. The best care extends beyond treating disease and people’s pains to include extending help with the difficult but normal tasks of adjusting to the progressive changes and strains of illness and demands of completing one’s life.
What is palliative care, and how is it different from hospice?
Palliative care is an inter-disciplinary team-based approach to people living with serious illness which responds to their physical, emotional, social and spiritual needs and seeks to improve quality of life for the person as well as his or her family. Hospice is the oldest and most familiar form of palliative care, which is intended to serve people who are dying. In the United States, most hospice care is delivered in people’s homes.
Every time health care reform is discussed, there is concern that if the government is involved it will lead to things like “death panels.” Should people be worried?
People are scared to death of dying. Either they fear dying prematurely because their lives are devalued by doctors or by our consumer-oriented society, or they fear being kept alive “like a vegetable” beyond any hope of being able to engage in or enjoy live. The fear of government death panels is another indication of the distrust that people have in doctors and nurses, and the hospitals in which we practice.
The best thing to do with ones fears is to write down what you think you would want – or not want – if you became seriously ill and couldn’t speak for yourself. Who would you want to speak for you? What would you hope that person would do – either lean toward aggressive treatments to save and preserve your life or allow you to die gently? Making it formal – by completing an advance directive (often called a Living Will or Power of Attorney for Health Care) you can give the people you love authority to make decisions for you.
In addition to giving the people you choose authority, advance directives can decrease the burden that relatives and friends feel in making decisions when you are too it to do so for yourself..
You have mentioned America’s health care system being a disease-treatment system. How do you think we can improve to make it a preventative-based system?
We have to expand the focus on American health care to include not only injuries and diseases, but also the people who live with them – as well as the families of those who are ill.
Beyond the pathophysiology of injury and disease and physician and pharmacological aspects of treatments, we can attend to distress that is emotional, interpersonal and social, and even spiritual in nature – and we can strive to improve people’s sense of well-being.
We should prevent injuries and disease to the extent possible, but we must also prevent complications and avert crises among people with chronic health conditions. Secondary prevention could improve quality of care and life for people in fragile health while decreasing health care costs. Secondary prevention also extends to preventing crises and stress-related illnesses among family caregivers.
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